March is Endometriosis Awareness Month! Endometriosis is a chronic full-body inflammatory disease when the tissue similar to the lining of the uterus grows outside of the uterus, which can cause fertility issues, chronic pain, and so many other health problems. Endometriosis is considered to be one of the most painful conditions that are often misunderstood in the medical community as a bad period. Women can sometimes struggle for up to ten years because not all doctors are trained to recognize it, and sometimes we are dismissed and told severe, debilitating period pain is normal, and that all women get cramps. It can be hard to get an endometriosis diagnosis because there is no cure, and very little can be done to treat the disease. The standard treatment for endometriosis is usually pain medication, hormone therapy, or surgery, which sometimes gives patients very little relief. Friends and family want to be supportive of their loved ones living with endometriosis, but sometimes people don’t know how to support someone living with invisible pain and are as supportive as they think. How do you support someone with endometriosis? In this post, I am going to share a few ways you can support the endometriosis friend you have in your life.
Don’t tell people it’s just a bad period – When you have a disability such as endometriosis, it can feel isolating sometimes because people often think that it’s just bad period cramp and to take Advil. If you want to support your friends with endometriosis, one of the best ways to do that is to stop contributing to stigma and telling people it’s just a bad period. People with endometriosis do have more severe period cramps than people without the condition, but we also struggle with chronic pelvic pain, difficulty going to the bathroom, and fertility issues, just to name a few, because it is a full-body disease. Please stop telling people it’s just a bad period because it’s more than just period cramps, and it hurts those living with the condition when you completely ignore the severe pain and fatigue that comes with it.
Educate yourself-As a disabled person, I do not expect my friends and family who do not have endometriosis to be experts on the condition, because you will never fully understand a disability you have never experienced. I am a strong believer that one of the best ways you can support someone living with endometriosis or any disability is to educate yourself because a lot of disability stigma comes from people not being educated and making wrongful assumptions. Talk to people who live with endometriosis or read up on the condition because people who are educated are often more understanding than those who don’t know what they are talking. Education is so important because people who don’t have knowledge tend to believe stigma and say things that are dismissive and harmful. If you want to be the best support system you possibly can be, please educate yourself and don’t believe stigma.
Listen to people living with it- If I tell you that I am struggling with pain, please don’t say “You look fine to me, and it doesn’t look like you are in pain.” Pain doesn’t have a specific look, and it is not a compliment when I am in a flare, and you say I look good, and it is very dismissive of the severe pain that I am experiencing. When you have endometriosis and are in a pain flare, sometimes you feel alone and one of the best ways you can support someone is to believe in pain that you cannot see. You don’t have to understand what I am going through to be supportive of it, because listening and not questioning whether my pain is real is one of the best ways to support someone. People with endometriosis often feel alone and misunderstood, and listening and validating pain can go a long way because I shouldn’t have to prove my pain to you.
Offer help on hard days- When you have endometriosis, sometimes the pain becomes so severe that getting up to go to the bathroom can be a serious struggle. If you see someone struggling, one of the best things you can do for them is to offer help, because sometimes the pain makes it very difficult to move, and offering to set up my heating pad for me can make my life infinitely easier. I love it when people offer to do things when I am struggling with pain because it takes me twice as much effort to do basic tasks.
Find us a doctor who understands endometriosis. Endometriosis is a common disease that affects millions of women, and you would think with it being so common that it would be easy to find a specialist, but it’s not. Progress is made when your doctor understands the complexities of endometriosis and recognizes it’s not just a bad period. It is not always easy to find a specialist because not all doctors are trained to recognize the disease, and I think struggled for at least three or four years before I was officially diagnosed. If you know someone who has been struggling with endometriosis, helping them find a doctor who understands the condition is a great way to support them, because patients shouldn’t have to deal with doctors who tell them endometriosis is not a real disease.
Don’t judge the way I manage my pain- When it comes to pain, people will have their own opinion on how they think I should be managing my pain. If you have an idea that you think will help me, get some relief from pain, I am always open to hearing them, but it becomes a problem when your suggestions turn into you judging the way I manage pain. There is no right or wrong way to manage pain because everyone gets relief from different things, and you should never make someone feel like they aren’t doing things the right way. Accept that what I am doing is working for me instead of telling me that I’d be cured if I did your suggestion.
Please don’t say all women get period cramps- People sometimes think they can relate to period pain because they are a woman and get periods. It is true that all women get period cramps to some level, but not all women get debilitating pain that prevents you from being able to live life like people with endometriosis do. Please never say that all women get period cramps because it’s dismissive of the severe pain I am experiencing.
Endometriosis is a very difficult diagnosis to accept because it can take years for patients to find a doctor who understands that severe, debilitating period pain is not normal and should not prevent you from living life, but often does when you have endometriosis. We need to do more for people struggling with endometriosis because it can be more painful than going into labor or having a heart attack, but yet patients are still being prescribed Ibuprofen. You may not be able to take away my pain, and it is okay if you don’t understand what I am going through, because a little support can go a long way. I am fortunate that I have a good system because not everyone has that and when you don’t have a good support system, it makes the hard days even harder. If you are struggling with endometriosis, remember that you are not alone and don’t have to prove to anyone that your pain is real. How do you support someone living with endometriosis? If you liked this post, please leave a comment below and share it with your friends.
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